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Every supplement that helps me SLEEP shuts down my LUNGS and vice versa!

Discussion in 'Hypersensitivity and Intolerance' started by ChickenBear, Jun 9, 2017.

  1. ChickenBear

    ChickenBear

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    I'm pretty sure I have MCAD/Masto or another histamine type issue. That or mold issues- I just moved from NYC and was there for 3.5 years and miserable for every second of it. The guy who lived above me was crazy-there were HUGE leaks at some point in every room of my apartment.

    Before New York I had never had hives in my life. Now it's a constant battle :(
    Of course, I was doing other idiotic things while living in NYC that could have been the trigger for the hives- (taking Advil PM or Benadryl to sleep *every* night for six months. Yay NSAIDS- read the label kids!!)

    And getting fillers put into my face.

    I.KNOW.
    I AM AN IDIOT.

    But you don't need to tell me that, I promise I'm well aware...

    But still, I keep coming back to either the mold or undiagnosed, lifelong MCAD. Perhaps caused by dysbiosis. My longest running symptoms, from childhood have been chronic UTIs +bladder inflammation (no structural abnormalities found), asthma and allergies (ended up in the ER several times as a kid), fatigue and depression/anxiety/insomnia.

    All these fit the MCAD profile.

    High School rolled around and I was also diagnosed with Hashi's (an accurate diagnosis I think, I still take my desiccated thyroid every day) and then in college I *really* crashed was diagnosed with Interstitial Cystitis. And then later Lyme, blah blah.

    It never ends.

    But in late 2012, after regaining a sliver of my health, I decided to move to New York City. In an *old* building. As a (still) immunocompromised person.

    And in a lot of ways, I'm now sicker than ever. I'm taking a functional medicine approach and basically just trying to treat myself at this point- I'm so disillusioned with the medical establishment.

    But I'm running into a very specific problem:

    Every supplement that relaxes my brain and helps my intractable insomnia also closes up my airways.
    So I don't end up getting quality sleep either way.

    I used to be able to tolerate a wide variety of prescription meds and almost all supplements (as long as my bladder could handle it) but no more.


    Here's what I've tried:

    L Tryp- terrible, terrible asthma upon waking
    Valium- same deal
    Melatonin- used to be my old standby but now variously gives me vertigo, asthma and hives. Even in tiny does.
    Magnesium doesn't close my lungs but I was using it for a while and after a few weeks it was making me dizzy and anxious.


    I know I'm forgetting several others.
    Conversely, Quercetin is a GREAT lung opener for me but then I cannot sleep for love or money, even if I've taken it HOURS ago. I'm +/- for one of the COMT genes and MAOA +/+ and CBS +/+ and many many others.

    Anyone have any ideas as to what's possibly going on here? And what I might be able to supplement with to keep both my lungs and my brain happy?!

    Thanks guys!
    (This is my first post so I'm sorry it's so long or if my post protocol is off- go easy)
     
    merylg, Gingergrrl and Runner5 like this.
  2. NotThisGuy

    NotThisGuy Senior Member

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    yes, i started to get breathing issues, too.
    I now figured out it's related to low cortisol.
    Or at least whenever I've got it cortisol or cortisol raising supps (Vit. b5) open my airways.
    Unfortunately I can't really take both, since cortisol makes my OI worse.

    Quercetin also helps with this, but somehow it also makes me worse...
    Maybe because it's slowing down liver phase one or depletes B1.. I dont know.

    The only relieve (beside cortisol) I found for this problem is Vitamin D, or maybe dopamine in general.
    (Makes my brain and lungs happy)
     
  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    You might want to reconsider the magnesium. There are many different formulations. The cheapest and most available is MG oxide. It is not a good choice.

    Mg malate is a good choice. Our bodies actually need malic acid. And Mg glycinate which usually has taurine in it as well. That with vitamin C sometimes helps some people.

    It may take a while to have a good effect. You could try using other meds/supplements on a rotating basis. If I'm really tense I occasionally take a muscle relaxant. And I have a Rx for ativan but because of it's long term effects I take it only if I've had difficulty sleeping after several days. But these may also present a problem for you -- I would suggest that whatever you try medication wise you don't use it daily.

    Just some thoughts. Insomnia is a horrible affliction.
     
    merylg likes this.
  4. JaimeS

    JaimeS Senior Member

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    Vitex ended up helping me with my breathing issues; not certain it would help you, I'm not a physician, this is not medical advice. :)
     
    merylg and Never Give Up like this.
  5. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    If your sleep med related lung troubles don't continue though the following day, you may have mild sleep apnea which is worsened by sleep meds. So, if it's just while you are sleeping or trying to sleep, go get an evaluation from a board certified sleep specialist.

    The rash could be a contact dermatitis. You may have developed an allergy to something in your soap, shampoo, conditioner, or something else. The docs most efficient and figuring that out are those who are members of the American Contact Dermatitis Society, they have a member directory here https://www.contactderm.org/m/directory.cfm .
     
    merylg likes this.
  6. Gingergrrl

    Gingergrrl Senior Member

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    @ChickenBear Are your breathing problems only when you lie flat or are they when you stand/walk? I have MCAS and mold history and trying to compare to myself. Do you have POTS or orthostatic issues? Also, can you pass a spirometry or PFT (pulmonary function) test? Lastly, you said that Quercetin helps you (and it also helps me) so I was wondering if you have ever tried Ketotefin?

    @NotThisGuy I love your avatar w/the doggies in the car!
     
    merylg and NotThisGuy like this.
  7. ChickenBear

    ChickenBear

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    Thanks for the tips everyone!
    I'm gonna try to answer some of the questions that were posed to me:

    Gingergrrl, my breathing problems continue after standing. The only thing that relives them are inhalers, Singulair or or Quercetin. Quercetin is actually the best but then when bedtime rolls around, I regret taking it because NO SLEEP FOR ME. Singulair was my go-to for years and years but since my sensitivity has ramped up, I find it's causing me hives. I've added Zyrtec to the mix recently, also something I've taken the past. I seem to be tolerating it fine. I believe it is a form of Ketotifen? I haven't had a PFT lately but I get them 1-2x a year and I usually check out fine but just with somewhat compromised lower airways. I've looked into POTS and don't think that it fits me totally however I do have dizziness/vertigo and pulsatile tinnitus. For a while I was getting regular tinnitus too + was convinced I had Meniere's. I also have low blood pressure. It's less to do with standing vs lying down for me though. It's more about what meds I took or what I ate, that tends to impact it.

    Never Give Up, as you might have read above, my lung issues *do* continue throughout the day until I address them w/ meds or supps. But it's interesting what you say about apnea though because I DEFINITELY exhibit some of this. Or at least air hunger. I'll be asleep on the couch and wake up with no air in my lungs, gasping, and terrifying myself and anyone else in the room! Rash is definitely not contact derm- I've done all the elimations and I've also had multiple back patch tests and a biopsy. One with a top skin allergy doctor in NYC. He is still mystified. I'm convinced it's mold or mast cell stuff, probably one brought on by the other.

    Snowdrop, I've tried Mag Glycinate and Mag Sulfate, both transdermally. Also epsom salt baths. At first the mag was a revelation. I've never tried anything that quieted my bladder spasticity so well. And I'm someone that's had bladder surgery, Rx painkillers/muscle relaxants and PF physical therapy. It was amazing.

    I only used the Glycinate spray once or twice because it made me really dizzy. And the dizziness lasted for days and days. Then I switched to the Sulfate which worked wonderfully for a couple of weeks. And then it started to get weird too. I would get dizzy and anxious. I'd wake up in a panic with air hunger about a hour after going to bed.

    I know that epsom salts are seen as being detoxifying. So maybe the mag was actually starting to pull stuff out and it was a herx? I don't know. It freaked me out though, so I stopped.

    Maybe I should still try the malate?

    Thanks so much guys! It's nice to be in a place where people actually *get* all your complaints and don't look at you like you are a crazy hypochondriac with two heads. :)
     
    Last edited: Jun 11, 2017
    merylg, Gingergrrl and Never Give Up like this.
  8. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Sounds like you are really working hard to chip way at your symptoms.

    That's easy to fix, and I'd recommend doing so before it induces a heart attack or a stroke.

    That makes sense. Is the Zyrtec helping?
     
  9. ChickenBear

    ChickenBear

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    Wow, so that's terrifying. The research I did led to me to believe that the risks with sleep apnea were more indirect, as in, the quality of your sleep can be diminished for years...leading to poor health. Rather than, say, you're gonna die in your sleep due to lack of oxygen. But I guess I'm really overdue to get it checked. I've just kind of lost faith in specialists over the years and I've already had the sleep test where they put all the electrodes on your scalp and then monitor you. It was eons ago but everything came back normal.

    When you say easy to fix, do you just mean surgery? Or like a CPAP mask? My apnea symptoms come and go and right now they're on the wane and so, getting less of my focus. The squeaky wheel, eh?

    The Zyrtec is working pretty well. It's only been a few days since I've been back on it. I'm definitely tolerating it. Maybe this time it will be the magic bullet-one can hope right?!
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    It sounds like your breathing problems are not connected to positional changes (supine, sitting or standing) vs. more constant? If so, then they are very different than mine, which are much better now, but occur when I am standing/walking or when I reach my arms above my head, bend down to pick something up from floor, etc.

    Zyrtec and Ketotefin are actually two completely different meds. Zyrtec is the brand name for Cetirizine and is an antihistamine whereas Ketotefin is a mast cell stabilizer. I actually take both 1x/day (but was taking a much greater dose when my MCAS was acute).

    My understanding is that not wearing C-PAP (if you truly need one and I have no idea if you do) can contribute to heart attack risk.
     
  11. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I completely understand. It is hard to keep believing when only a handful of docs have anything constructive to offer for ME/CFS. There are incredibly good specialists out there, it just takes time, work and persistence to find them. Treating any treatable symptoms will improve your quality of life.

    Age, weight gain and medications change how well our bodies breathe when we are asleep. It's a new eon, if you're symptomatic, go get a new evaluation. Just remember to find a board certified sleep specialist, they know more and can help more with sleep problems.

    CPAP.

    When your brain is sleeping and your body can't move air in and out because you have apnea, your oxygen levels decline, your CO2 levels climb, your heart starts racing to try to move oxygen to your tissues, your body starts panicking, it is trying desperately to survive, this is what triggers heart attacks and strokes. Eventually your brain wakes up, you gasp, take in air, everything calms down and you go back to sleep, most of the time without even noticing it.

    Good! Fingers crossed.
     
    merylg likes this.

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